... that but how can I help him? I want to respect his privacy but I worry that he isn't telling his doctors all of his symptoms. If he's already having symptoms, should he be in some kind of treatment? I don't know if he is in denial or not but I suspect he is as he just says he's in the early stages and no treatment is necessary. But he already has scarring of his bone marrow, pain in his bones and joints, an enlarged spleen and liver and fatigue. Those sound like symptoms to me that need treatment.
Does he have insurance that would cover it? That could be part of his reticence to talk about what is going on? Doctors can be pretty casual about telling you the importance of something if they think you may not listen or they have made some harsh assumption based on nothing. I get well meaning relatives ask me why "x" isn't happening? It's too hard to explain in detail why I end up with multiple pathologies that need treatment and why they are not getting fixed. It makes me sick talking about in person and I don't like crying in front of people.
My 45 yo dtr was just diagnosed with rheumatoid arthritis. I asked her if she was seeing a rheumatolgist, if they were helping, how she was feeling. If he is seeing a hematologist then you can be assured he's seeing someone who will do what is right. Then after that I just ask how she's feeling. She'll tell me more that way then if I pry. They are adults after all. I have a chronic illness myself and Steve is correct, sometimes you just don't want to talk about it or it starts to get overwhelming. Ask how he feels and be there to help him and listen. The Mayo Clinic has a good site on it. mayoclinic.org/diseases-conditions/myelofibrosis/basics/definition/con-20027210
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